Transcript

Norman Swan: What a difference a word makes when it comes to important decisions you might make about cancer treatment. A Canadian study has found that when the word 'cancer' is used, even when the tumour is relatively harmless, the person's attitude becomes more fearful and colours their decision-making. The study asked people about hypothetical scenarios around early thyroid cancer. There's been an epidemic of this diagnosis, linked to an epidemic of CT scans of the chest, which have picked up a thyroid nodules as an incidental finding because the neck has been caught up in the scan. The trouble is that while under the microscope these nodules have cancerous features, the vast majority won't progress. The study looked at whether our feelings about exactly the same tumour change according to the name. The paper's lead author was David Urbach, Surgeon in Chief at the Women's College Hospital in Toronto, and I spoke to him earlier today.

David Urbach: We sample people who don't have any history of cancer or any problem with thyroid cancer to ask them about different scenarios related to having a thyroid cancer. We presented people with pairs of scenarios and asked them to state which one they preferred.

Norman Swan: What does 'preferred' actually mean?

David Urbach: 'Preferred' meant which scenario they would rather have. We were presenting them a scenario with a list of different attributes, one of which may have been treatment, but it just ask them to distinguish which one from their perspective is better. So was it better to have something called a thyroid nodule that had a risk of progression of 1% and was treated with just watchful waiting, or was it better to have something called a thyroid cancer that had a risk of progression of 5% and would be treated with surgery. The specific things we looked at were what this disease was called, so if it was called a thyroid nodule or a thyroid tumour or a thyroid cancer. We looked at whether the condition had a risk of progression or advancement of 1%, 2% or 5%…

Norman Swan: Regardless of what it was called.

David Urbach: Regardless of what it was called. And these are all presented in different combinations.

Norman Swan: And what did you find?

David Urbach: So what we found were that they prefer to have something called a thyroid nodule more than they prefer to have something called a thyroid tumour. And what they least preferred was to have something called a thyroid cancer. For example, having something that was called a thyroid cancer was as bad as having a condition that had a 5% risk of progression as opposed to a 1% risk of progression.

Norman Swan: This is not shocking, most people would rather have the label 'nodule' than 'cancer'. But what can you infer in terms of day-to-day life in clinical practice or for patients who might have had a nodule turn up on an x-ray by accident?

David Urbach: One thing that this study clearly shows us is that the word itself is important and it has outsized importance. The implication to doctors, for example, is that it's not just enough to think you're having a conversation with a patient where you provide different types of alternatives to deal with what you believe in a low risk cancer that may not require surgical treatment or may not require aggressive treatment. As a doctor you may think you've presented all the pros and cons and risks and benefits, presented this bouquet of information to the patient, at which point they're going to make a rational decision that's best for them. What this tells us is that's not necessarily going to happen because the word 'cancer' is so influential and has such profound social meaning that the patient may no longer take all these other factors into a very rational consideration and in fact make a decision that might be best for them, but they might be so driven by the term that has this very profound meaning and may choose treatments that are more aggressive, such as surgical treatment that may not be warranted and may not even be what they want deep down.

Norman Swan: And this is most acutely and more commonly found in prostate cancer.

David Urbach: Really the elephant in the room is prostate cancer which is a much more common cancer and one which we've known for many years now there is a very large subset of men who have early prostate cancers that are completely innocuous. They will never really progress, never cause death or disability in the lifetime of a man, yet overwhelmingly, at least in North America and I suspect this is true as well in Australia, men opt to have surgical treatment for these low risk prostate cancers. It's been a challenge to try and understand exactly why that is, why are people electing to have surgical procedures that give them a fairly substantial risk of very troubling side-effects, even when they are told explicitly the treatment has no benefit. We know from experience this happens all the time. What we believe is that men with prostate cancer, and alternately as well people with this thyroid cancer scenario, are just being driven by the fact that the word 'cancer' is being used, and 'cancer' to them has this meaning, and the meaning is this is a disease that could kill them, it cannot remain in their body and it needs to be surgically removed or treated very aggressively.

Norman Swan: Some people argue that we should change carcinoma in situ in breast cancer, early thyroid cancer and early prostate cancer and we should call them all nodules. Would that be conning patients?

David Urbach: What we call these things is very important. It's obviously as well important to be honest with patients, and I think if something is a carcinoma because a pathologist interprets it to be a carcinoma, then that has to be disclosed to patients. So I think we cannot use terms that are not scientifically correct or that are misleadingly wrong. What our challenge is is to understand that this word is so loaded and so powerful that we have to redouble our efforts to make sure that patients really understand what we are talking about and to focus more on a discussion of natural history of the disease and the consequences of treatment and really try as hard as possible to push away from the fear that we know is going to be associated with a diagnosis of cancer.

Also important to realise is the doctors that are often having these discussions with patients are surgeons. We do not have great training in having what is really a very complex and nuanced and critical conversation about the nature of these patient fears that arise with a label like 'cancer'. It takes special skills to really help people understand what the considerations are for treatments of some of these early cancers for which aggressive treatment is often not warranted.

Norman Swan: David Urbach, thank you very much for joining us on the Health Report.

David Urbach: Thank you, my pleasure.

Norman Swan: David Urbach is Professor of Surgery at the University of Toronto.